Video Interviews: Being Positive about Life

Five people talk about how they overcome the worries and problems that genetic conditions can bring and how they look towards their future and the future of other sufferers

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The Transcript:

Being Positive About Life

I haven't let tubular sclerosis take over my life - it's there, but it hasn't taken over because I have a life to lead.

It certainly doesn't play on my mind all the time, I think the good thing is that I have a lot of good friends and family, saying that I've had to educate them about tubular sclerosis and many people don't know what to expect but I think the more you talk about it the better. Just let people know what's going on and don't let it rule your life. People say to me how can you be so positive, it's not being positive, perhaps, in fact it's just not looking on the negative all the time - it's appreciating what you do have. I met somebody the other day who's on oxygen sixteen hours a day and she's also on haemo-dialysis she's got such a positive outlook because she realises that she's got a life, she's going to school, she's studying and I think "Yes". I look at someone like that and I think wow, that is inspiring.

I think we've got a phrase in the TSA and we started it out 7 years ago when we started our "outlook" group, which is a group for mildly affected adults. It's called "I've got TS, but TS doesn't have me" and that means, really I'm not living under any sort of shadow of TS I'm out there enjoying my life, having a good time and I think that is the way it should be.

The future looks fairly rosy for haemophiliacs the treatment is a lot better, they shouldn't have to suffer the arthritis and the long term conditions that the older haemophiliacs suffer as there's prophylactic treatment now which means they shouldn't actually have the haemorrhages in the first place. So in general, the future's good.

The fact that I was born with haemophilia, this genetic disorder, it is part of me I am a haemophiliac. It's made me grow up as the person I am because I've had to lead my life around it. The thing is, in the end, you don't. You realise that the haemophilia has to fit in with you and not you fit in to the haemophilia. Once that's the attitude, life's perfect.

You have to adapt your life and obviously you can't do as much as you used to do but there is still quality of life there.

Having cystic fibrosis isn't the end of the world, I get on with my life, I do normal things and I'm hopefully going to go to university. Planning for the future I think is even more exciting for me. I want to live life to the full, and I do. I fit CF round my life and not my life around CF and I'm proud of everything I have done.